Why Will You Walk?
By Casey Raymer
In December of 2008 my husband, Lee, and I found out we were pregnant with twins after a long struggle with infertility. We were, of course, overjoyed! We were in awe of those tiny people growing inside me and greeted each check-up and ultrasound with excitement.
We eagerly anticipated finding out the babies’ genders at my 19 week anatomy scan. The scan of Baby A went just as it should and we were thrilled to discover that we’d be having a boy. But when the ultrasound tech began the scan of Baby B we could tell something was terribly wrong. She spent an inordinate amount of time looking at his heart, and our worst fears were confirmed when the doctor came in to tell us that they had identified a congenital heart defect. The excitement surrounding our pregnancy quickly turned into fear and panic.
The next few months were a blur of doctors’ appointments, surgical consults, ultrasounds, and more doctors’ appointments. The concern over Baby B’s health was compounded when I was diagnosed, at 28 weeks, with Preeclampsia – a potentially life-threatening disorder that can affect both mother and baby. My deteriorating health and the fact that I was carrying twins significantly increased the chances that I would not carry the boys to term, and my physicians began proactively preparing for the worst while still hoping for the best. I was given steroid injections, which would help the boys’ lungs mature and was started on magnesium sulfate, a drug that treats preeclampsia, helps to prevent preterm labor, and may be able to prevent cerebral palsy in pre-term babies.
Despite everyone’s best efforts, however, further deteriorations in my health prompted my physicians to deliver our twin boys, Wilson and Mack, by emergency C-section on July 2, 2009, nine weeks ahead of their August 31 due date. Born at 31 weeks and weighing 3 lbs. 11 oz. and 2 lbs. 9 oz. respectively, Wilson and Mack -like half a million babies born in the US each year- were born too soon, too small, and with significant health problems.
The birth of a baby is supposed to be the happiest time in a family’s life but for ours, and families like ours, it is frightening, confusing and overwhelming. The nursery I had painstakingly decorated was supplanted with the sterility of a hospital NICU. The gowns and booties I had been given at showers were cast aside as my boys were adorned instead with a maze of wires and IVs. The sounds of lullabies I sang at their bedside were drowned out by the beeps of the machines that monitored each breath and the hum of the pumps that administered the medicines that kept them alive.
I was jealous of mothers who could hold and nurse their new babies. I was angry, I’m not sure at whom. I was tired, so very tired. I was sad, achingly sad. But more than anything, I was scared. Scared not only of what the next day held but what lay ahead for my boys and for my family in the long term.
Soon after the boys were born, they were transferred to the Neonatal Intensive Care Unit at Brenner Children’s Hospital. Wilson spent 46 days in the NICU. He had difficulty learning to eat and suffered from frequent apnea spells and drops in his heart rate. And he was the healthy one!
When we were finally able to bring Wilson home, our joy was tempered by the fact that Mack still wasn’t healthy enough to leave the NICU. Mack spent an unbelievable seven months in the hospital, during which time we discovered that his challenges weren’t limited to his premature birth and a congenital heart defect but that he also had a genetic condition, 22q deletion syndrome, which could affect every system in his body. While in the NICU he battled every day just to survive. He endured months on a respirator and numerous surgeries including an open heart surgery when he weighed only 4 lbs. He was nearly three months old before I was able to hold him, and even then it was for a just a few minutes at a time because he remained so unstable.
Once Mack came home from the hospital, he didn’t come home unencumbered. He required supplemental oxygen, machines monitored his heart rate and oxygen saturations, and he was – and continues to be – fed by a feeding tube. The door to our home revolved with visits from nurses and therapists, and there were more doctors’ appointments than I care to count. And just when things started to seem “normal”, everything would come to a screeching halt when something as simple as the common cold would send us back to the hospital for days or weeks at a time at a time.
When the boys were not yet a year old, and we were preparing for Mack’s second heart surgery, I found out I was pregnant again. My pregnancy was picture perfect until my 29th week when I suffered a fall that threatened yet another preterm delivery. It was through quick action by my physicians – armed with research funded by the March of Dimes – that we were able to stave off another premature birth, and on January 12, 2011 we welcomed our third son, Gus, born full-term and healthy at 6lbs 14 oz. (a full 10 oz. bigger than the twins combined!)
Today, Wilson and Mack are just months away from their third birthday. Wilson, amazingly, has no lasting consequences of his premature birth, thanks in large part to medical advances like surfactant therapy, funded by the March of Dimes. Mack, who still struggles with the lasting effects of his premature birth, including significant developmental delays, and many health issues that have been made more complicated because of his early arrival, blesses us each day with a strength and determination that overwhelms and inspires us.
The saddest part of our story is that it isn’t just OUR story. We are one of many.
This is why our family supports the March of Dimes, an organization that champions the needs of all babies – those who are born healthy and those, like my boys, who needed help to survive and thrive. However, the March of Dimes needs everyone’s help to keep its programs moving forward. Each spring they have a wonderful walking event called March for Babies. This year, the Winston-Salem March for Babies will be held on Saturday, April 21, 2012 at Corpening Plaza in downtown Winston-Salem. Start your own team at www.marchforbabies.com or join/donate to our family team at http://www.marchforbabies.org//team/t1777252.
I will walk in honor of Wilson, Mack, and the millions of babies who, like my boys, entered this world under less than ideal circumstances and persevered despite their many challenges. I will walk in honor of Gus and the many babies whose stories might have taken a very different course were it not for treatments made possible by the March of Dimes. I will walk in memory of those babies who did not survive and the families who love them.
Why will you walk?
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